Ask About My Peanut Allergy

Peanut Allergy Success & Bone Marrow Donors Needed

2011-09-08T16:33:34-05:00

Just a quick update that Bo is doing well with his peanut allergy treatment. He continues to eat 34 peanut butter M&Ms everyday to maintain his peanut desensitization. Bo is not “cured” of his peanut allergy but he has become significantly enough desensitized to peanuts that our world is nearly normal again.

FYI, Bo’s grandmother is undergoing treatment for acute myeloid leukemia. Did you know that the bone marrow donor database is quite small, leaving many people without a match? It also may surprise you that immediate family is frequently not a good DNA match. So we wanted to take this opportunity to help raise awareness that just about anyone age 18-60 can become part of the bone marrow donor database with a just a simple cheek swab to collect some DNA. Learn more about becoming a bone marrow donor at www.marrow.org.

For our new readers, a quick recap of the past 5 years of Bo’s peanut allergy journey is provided below:

Nov. 2006: Bo is diagnosed with a life threatening peanut allergy after losing consciousness during an anaphylactic reaction to a bite of a candy. Suddenly, we realize it is life threatening for Bo to eat out, enjoy treats at schools, travel or even have birthday cake at parties.
June 2007: Bo starts a peanut allergy study at Arkansas Children’s Hospital over 400 miles away in Little Rock requiring 14 hour car trips … every other week… for over two years… to monitor his reaction to increasing peanut doses, do skin tests and blood work!
June 2008: Bo fails his peanut challenge and we learn during the unblinding of the year 1 clinical results that he had been randomly assigned to a placebo control group the first year and not actually receiving peanut powder. We are now faced with having to repeat a year of the peanut allergy treatment study starting at the minimal introductory dosage. We are emotionally drained and financially frustrated but ultimately realize we are blessed to be in a treatment program whose future results will now be validated by a lack of response to the placebo treatment.
April 21, 2009: Bo and his mom are included in a USA Today article entitled "New strategies help build immunity against food allergies" by Medical Reporter Rita Rubin.
May 2009: In order to get enough peanut protein daily to maintain his increasing levels of desensitization, Bo graduates to eating more than 30 peanut butter M&Ms every day instead of peanut powder. This phase of the study only requires quarterly visits instead of twice monthly.
Aug. 2009: Bo’s peanut allergy treatment is going so well he no longer has to eat at the peanut safe table at school.
Oct. 2009: Bo passes peanut challenge after 1 year of peanut allergy desensitization treatment.
June 2011: Bo is interviewed as part of a KTHV 11 Little Rock news segment video entitled "Helping your child cope with food allergies".

Thank you all so much for your many prayers and kind e-mails. We pray that all people dealing with food allergies soon have the option to participate in food allergy desensitization treatments if they want to and one day for the preventive cure to end the fear, anxiety and suffering caused by life-threatening food allergies!

Sincerely,

Bo's parents

Video Update of Bo's Peanut Allergy Treatment

2011-06-09T21:14:45-05:00

Bo is doing great with his daily peanut allergy desensitization treatment that was started in July 2007 at Arkansas Childrens Hospital (though it turned out he was actually receiving placebo treatment the first year).

As you will see in this KTHV 11 Little Rock news segment video entitled "Helping your child cope with food allergies", Bo still eats 34 peanut butter M&Ms every day for his peanut allergy maintenance treatment as is doing very well! (Note: First time visitors to Bo's blog can get a summary of Bo's peanut allergy study by reading our June 27, 2010 update post).

Because of the success of significantly desensitizing Bo to peanuts, our life has returned to a near normal (meaning pre-peanut allergy diagnosis) lifestyle. For example:

Bo is able to eat out in many more restaurants (though we obviously avoid menu items with peanuts in the ingredients)
Bo is able to eat cake & ice cream at most parties now... "just like the regular kids" (amazing how much this means to him)
Bo recently took his first trip out of the country to the fabulous Rosewood Mayakoba resort near Cancun Mexico where he experienced many firsts, including snorkeling, riding horses on the beach, swimming in cenotes and exploring caves. They did a fabulous job of accommodating his food allergy with all the food preparation (restaurants, poolside, even room service). Having a mom that's a travel agent certainly has it's perks!
We can all relax and enjoy sporting events where they serve peanuts (even if the people near us are eating peanuts)
It's easier to feel good about Bo spending the night out or being in the care of a babysitter

The next phase of Bo's food allergy treatment will be to stop eating daily doses of peanut protein (peanut butter M&Ms) for 30 days and then see if his body maintains the same desensitization levels to peanuts. We are getting closer to the start of that phase and appreciate your continued thoughts and prayers for Bo's success so that other food allergy sufferers will benefit soon from this promising food allergy desensitization research and treatment programs.

P.S. Many of our readers have emailed asking why it' has been a year since our last post to Bo's blog. The short answer is we didn't have a lot of new news to share over past few months as Bo is now in the maintenance phase of his peanut allergy treatment study and we want to stay true to the original goal of Bo's blog which remains to share important moments of his journey through the peanut allergy study (vs. a day to day life recap blog) and to share the hope this research promises for all those living and coping with life threatening food allergies.

God bless!

Sincerely,

Bo's parents and Bo

Update on Bo's Peanut Allergy Treatment

2010-06-27T16:38:44-05:00

As a reminder, Bo started his peanut allergy desensitization treatment study at Arkansas Children's Hospital in July of 2007. At the time, he was so sensitive to peanuts that he would have an allergic reaction to less than a 50th of a peanut kernal.

Bo is now eight years old and his peanut allergy treatment is now in the long term phase where we only have to visit the Doctors once a quarter instead of every other week. Since May of 2009, Bo has been eating more than 30 peanut butter M&Ms every day as part of his treatment in order to maintain his desensitization to peanuts.

Over two years ago, Bo would typically have positive reactions to five of six of the various concentrations of peanut during his skin scratch tests. During his last skin allergy test this past May, Bo had negative reactions to four out of six of the peanut concentrations!

Life has dramatically improved for Bo as direct result of his peanut allergy desensitization treatment success at Arkansas Children's Hospital over the past few years. Because he is now desensitized to peanuts enough to no longer be at risk for cross-contamination levels of peanut, Bo has been able to resume many of his favorite activities and experience new ones. More restaurants and foods are on our approved list now, we have more vacation options (Puerto Rico and Amelia Island, FL were a blast) Bo can participate in and attend baseball games where peanuts are served, eat most birthday cakes, stay overnight with friends and family and experience summer camp for the first time. In other words, life is getting more and more normal for Bo all the time thanks to his continuing peanut allergy treatment!

The goal of Bo's peanut allergy treatment study has never been to completely remove his peanut allergy, but rather to desensitize his body to peanuts to a safety level that he can live a more normal life by simply needing to avoid food in which peanuts are an actual ingredient. Eventually, once Bo's quarterly blood and skin tests results reach a certain threshold consistently, he will move into the final active phase of the peanut allergy desensitization treatment during which he will completely stop eating his daily peanut dose. The hope is that his day-to-day experience, bloodwork and skin allergy tests will continue to demonstrate that his body maintains its desensitization level to peanuts even if he stops eating his daily dose. We know this may seem ironic for the parents of a child allergic to peanuts to say... but that phase of not eating peanuts everyday and then waiting to see how his body reacts, has us a little anxious. We aren't at that stage yet, but we know it's coming.

Until then, we will continue to post occassional updates on Bo's peanut allergy desensitization success. In closing, we want to thank you for your many wonderful comments, e-mails and prayers. We also wanted to answer two of the most popular questions we get asked.

Q. Can you help me get into a food allergy treatment program?
Unfortunately, no. The Food Allergy & Anaphylaxis Network (FAAN) has the most current information about food allergy treatment and study programs.

Q. Why haven't you updated Bo's peanut free food list?
Out of caution, we want to avoid adding foods to the list that Bo first ate after his peanut allergy treatments began.

P.S. As residents of south Louisiana we also ask you to keep the people and wildlife of the gulf coast devasted by the tragic oil spill in your prayers and thoughts. If you need perspective on how just how big of an area has been devastated by this ongoing oil spill tragedy, visit http://www.ifitwasmyhome.com/. Input your city and the oil spill area map graphic will overlay your address and surrounding areas on Google maps.

God bless!

Sincerely,

Bo's parents and Bo

Treatment Success Helps Normalize Bo's Life

2009-12-12T16:51:12-06:00

As most of our reader's know from following Bo's peanut allergy research study updates over the past 3 years, we have always focused on the positives. There are plenty of other peanut allergy blogs that chronicle the very real day-to-day challenges we all share of living with a loved one affected by life threatening food allergies. So after a quick trip down memory lane, we want to focus this update on how the success of Bo's peanut allergy desensitization treatments at Arkansas Children's Hospital in Little Rock are slowly bringing more normalcy to Bo's life.

Quick Recap of Bo's Peanut Allergy Treatment Journey

Bo is 8 now, but was 5 years old back in June 2007 when he started the "double blind" peanut allergy treatment study in which a small percentage of participants get a placebo instead of actual treatment but neither Drs. nor participants know who. At that point, he was so allergic to peanuts that his initial daily dosage amount that he was eating was so miniscule it looked like a few grains of sand in a cup. But over the course of the year as the doseage levels were slowly increased, Bo had worked up to eating the equivalent of about nine peanut kernals per day... or so we thought.

On his one year anniversary of participating in the "double blind" peanut allergy desensitization study he failed his food challenge and we learned Bo had been one of the kids randomly selected to receive a placebo in year one of the study. So in June 2008 after one year of 900 mile roundtrips every other week from South Louisiana to Little Rock, we regrouped and started the the process all over again, taking comfort in knowing that he would be getting real peanut for his daily doses from then on. By May of 2009 Bo had graduated to the maximum daily dose and switched from peanut flour to eating more than 30 peanut butter M&Ms every day! In October 2009 Bo passed his food challenge and has continued eating his peanut butter M&Ms every day since to maintain his peanut allergy desensitization!

Treatment Success Helps Normalize Bo's Life

Keep in mind that even though Bo is now able to eat more than 30 peanut butter M&Ms every day without an allergic reaction and we no longer have to worry about cross-contamination level risks, he is still allergic to peanuts. Therefore, we still avoid food with peanuts in the ingredients and Bo always has his Epipens with him wherever he goes.

Below is a list of the ways our life has changed for the better and things we have learned because of Bo's participation in the peanut allergy treatment study for the past few years.

Less stress now over the food being served at birthday parties and holiday meals
Now able to eat in more restaurants (convenient and fun)
Now able to eat some of the foods labeled "may contain" or "assembled in a facility that processes nuts"
Now allow Bo to spend the night out with friends and relatives
Now able to travel more
Are so appreciative for Disney's wonderful food allergy friendly parks
Enjoy receiving wonderful e-mails and comments to our blog about the hope that Bo's story has brought to so many families around the world dealing with life threatening food allergies.
Understand how even in your lowest moments, there is always someone dealing with more life burdens than you.

We pray that this holiday season and 2010 will be a time of good health, happiness and prosperity for all. And, as we do every night, we pray for world peace, for the military to come home soon safe to their families and give thanks for the many blessings in our life!

May God bless you and your families.

Sincerely,

Bo's parents
www.askaboutmypeanutallergy.com